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Newly diagnosed

Sooker55
Posts: 15
Joined: Aug 2013

Newly diagnosed chemo meeting with chemo doc tomorrow, anticipating chemo radiation to start on August 19. I am in shock, never having been sick and considered in peak of health. This was discovered via routine colonoscopy, large polyp removed surgically turned out positive for cancer and two prominent lymph nodes identified. Assumption is lymph node invasion, but that has not been confirmed and UCSF tumor board recommended aggressive treatment and surgical removal. Thanks for this discussion board as there is comfort in numbers. 

 

Any words of wisdom, suggestions, etc. would be greatly appreciated. 

John23
Posts: 1832
Joined: Jan 2007

Yeah..... Get a second and third opinion before you embark on any journey through hell.

To evaluate lymph node involvement, they take out -twenty- and if there are over four that
test positive, you are considered at risk. Less than four out of twenty isn't a problem.

Surgery is the best bet; chemo?? Ask around...

You -need- to get other opinions from colorectal surgeons that are not of the same group
or organization as your present one.

Best wishes,

John

 

Sooker55
Posts: 15
Joined: Aug 2013

John, where does you info originate? In my case they say I have two prominent nodes. Aggressive  treatment is the consensus of opinion of the tumor board at University of CA at San Francisco, my case being presented by the chief of colorectal surgery. I am worried of continuous cancer growth if I further delay. I do have a positive cancer off a removed tumor/polyp, but no positive cancer in lymph node. I am told needle biopsy would not be helpful because if the result was positive, same treatment would be given. If negative, doesn't mean there isn't cancer in some spot the needle didn't reach. 

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

 

You don't mention it, but have you had any scans done to determine if there is cancer elsewhere? 

If you only had the colonoscopy, it seems like a bit more investigation is in order before determining a course of action.

The course of action you take at the start can make all the difference in how well you do overall.

Have you been informed by your doctors about the long term effects of radiation and chemo?  I am not trying to offer an opinion either way on their use, but you do need to know how it can affect you later.

One of the things you will come to understand is that you have to be your own best advocate about your treatment and selecting options.  The more you know the better choices you can make.  And you will also come to learn that not all doctors have the same opinion on what you should do for your best chances.  No one doctor knows it all.

 

It is doubtful that a few weeks will make a significant impact if you delay treatment to get one or more tests or other opinions done.

Wishing you best outcome with whatever path you take.

 

Marie who loves kitties

 

 

 

 

 

Sooker55
Posts: 15
Joined: Aug 2013

In addition to colonoscopy I had CT scan that identified prominent lymph nodes, an endoscopic ultrasound that confirmed node enlargement and tumor/polyp removal with pathology coming back positive for cancer. Nothing tested anywhere else, just colon/rectal area. I really appreciate the guidance.

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

The most important part of determining the right treatment is to "Stage" the cancer. The big difference in your case if it's Stage 3 (lymph node involvement) or stage 4 (metastasis to distant organs). To determine that the initial CT should include the most common organs, the liver and lung.

Did they say anything about that and the Staging? 

Also if you don't mind sharing your age, where the polip was removed from? The more we know about each other the better we can help.

Take care till next time, don't panic, things will be fine. The anticipation is a million times worse then the actual event.

Laz

Sooker55
Posts: 15
Joined: Aug 2013

I am somewhere between stage I and stage 3. Tests so far have been inconclusive in terms of whether this is superficial or invasive. The recommendation for chemo/radiation and resection is based on probable lymph node involvement. I am thinking I should obtain needle biopsy to either confirm full fledge treatment, or if negative, I know that isn't conclusive but I might take a more conservative approach.  I am finding medicine is not an exact science. Tumor board at UCSF consensus was full fledge treatment. Tumor board up here in Northern California mixed bag of opinion. I don't know that there is necessarily a downside to waiting for needle biopsy, do you?

jen2012
Posts: 1252
Joined: Aug 2012

The nodes may be inflamed from the colonoscopy or other reasons - not necessarily cancer.   When they do surgery they will test a bunch of nodes.  Don't panic yet.  The first few weeks are really difficult - waiting to be seen, etc, but make sure you are comfortable with your docs and treatment plan before you do anything.    Second opinion is always a good idea, just for your own peace of mind.

Good luck and hang in there!

Sooker55
Posts: 15
Joined: Aug 2013

Thank you all!  This group is gonna be a huge resource and comfort to me.  Thanks to some of the suggestions I have already scheduled an appointment for a second opinion with Dr. Heinz-Josef Lenz at USC.  In the meantime, I will continue my local (norther California) appointments to get the recommended chemo/radiation treatment all planned, but wait for confirmation from second opinion.  Have not been given a stage yet but have an appointment today and will ask that and other questions.  So far there is no confirmed involvement in other organs, although there were a couple of cysts noted on liver during CT scan. There is no confirmed lymph node involvement either, just a "prominent" finding, and I'm told that means a high incidence of cancer involvement, high being from 5 - 10%.  Frankly, that doesn't sound so high to me, but what do I know?

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

If you live in Northern California, Stanford could be an other option closer to you. There is an other patient here (kennyt) who goes there. You should get in touch with him.

Good luck,

Laz

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

First of all welcome to the board you wish you didn't have to visit.  I'm glad that you are following through with other suggestions here.  Never hesitate to get a second opinion.  It's best that you do because it give you a conclusive or different approach to things.  You will be going through many emotions now as your life will seem like it is being turned upside down, especially with appointments, tests, doctors, etc.  Just be prepared for the hurry up and wait and always remember that when you are waiting for test results, it will seem like eternity.  Wishing you well in the upcoming months and glad that you found us because you can find much knowledge and comfort here.

Kim

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

Do you mean more biopsy of the colon or the lymph nodes. I'm not sure if they do biopsy on lymph nodes. They just remove them and examine them. But I may be wrong.

Where is you cancer located?

Laz

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Sorry you had to come here.  Will there be a PET scan done?  That's how they found the cancer in MY liver.   I have read where they aren't done then a year later it's found.   I would ask about a PET. 

annalexandria's picture
annalexandria
Posts: 2322
Joined: Oct 2011

Would have saved me a whole lot of trouble if I could have gotten a PET scan earlier in the process.  Especially since you have cysts on the liver, I would want that double-checked.

annalexandria's picture
annalexandria
Posts: 2322
Joined: Oct 2011

I'm very sorry you have to join us, but now that you're here, I hope we can help you out with some support and information.  In my experience (I'm stage 4, have had five surgeries, two chemos, NED-no evidence of disease, for 20 months), the very worst part is the first several weeks, before you get all the info you need for your medical team to develop a plan for treatment.  Once that plan is in place, and you have started dealing with getting this crap out of your body, you will start to feel better, I promise!  Well, maybe not physically, as the treatment is challenging, but mentally and emotionally.  It may be hard to fathom, but you really will.  And we will be here to support you every step of the way.  Almost any issue you can imagine has been experienced by someone on the board, and folks are very willing to share their knowledge, so just ask!

Sending some hugs and strength your way~Ann Alexandria

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